Life After Pheochromocytoma

I had an adrenalectomy on Friday, March 13th. Yes… Friday the 13th. My Grumpy Cat calendar was so appropriate for that day that I saved the calendar page and have it hanging on my fridge.

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Many of you have probably read my post “Life with Pheochromocytoma”. I know that my dad has practically been my publicist as far as that post goes, telling lots of friends and extended family members that they can find some insight into my experiences if they search for that post here on my blog. 

But my life has changed so significantly in the five weeks since my surgery that it is definitely time for another update, this one celebrating all the ways that my life has changed. So here we go: Life AFTER Pheochromocytoma. 

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Ready for surgery! Feeling so fortunate to still get into surgery just before hospitals postponed elective procedures.

First off, I feel INCREDIBLE! I can’t describe strongly enough how healthy I feel, how full of vitality. It turns out that living with a tumour for 4+ years really changes your baseline for what healthy feels like. For weeks 2-4 after surgery I would wake up, sure that I couldn’t feel better than the day before, only to be amazed at feeling better than I could remember feeling ever before. There was the obvious post-surgical recovery feeling better that I expected, but more than getting over incision pain and sleeping off side effects of anesthesia, I felt better, healthier, stronger every day. 

 

By every measure that I can take, my health has improved since surgery. My resting heart rate dropped 30 beats per minute in the five months that I was on alpha blockers, but in the weeks post surgery, even without any medication now, it has dropped 8-10 bpm further. Unlike many people with a pheochromocytoma, my blood pressure was never shockingly high. But on medication, I was getting readings generally in the 120s over 70s. Now it’s more like 95 over 65 – lower than most of the readings I was getting in the two weeks before surgery when my medication dose tripled! 

 

Since I’m not on medication any more, I don’t have the frustrating side effects that come along with pharmacology. Alpha blockers generally cause nasal congestion, and with the tumour, any decongestants (whether for the side effect or for a cold) were strictly off limits. After a couple of weeks without surgery, that congestion completely disappeared. I also had trouble with swelling in my feet and ankles, and this was particularly noticeable once my medication dose tripled. That has totally disappeared since surgery!

 

Of course there were my somewhat regular symptoms – a strange shaky feeling, an internal anxiety, a major spike in heart rate if something scared me, the inexplicable feeling that I attributed to blood sugar issues. They are all completely gone. I haven’t had any lab work done since surgery, especially given the COVID crisis, but I am completely sure that my adrenaline levels are back to normal just given how I feel. 

 

Those regular symptoms were pesky but didn’t feel life threatening – not like the massive spike in adrenaline I experienced every other month or so. I can only say what a relief it is to know I will never experience another one of those. I will never wake up again only to dread the next 48 hours, knowing the inevitability of worsening chest pain, tremors, hours of vomiting. It is an immense relief not to have to have the inner debate about whether or not I should go to the ER. (Even pre-diagnosis, it was an inner debate. I hated going to the ER when it meant being told that I was having a panic attack, when there was nothing that really helped me feel better, when I left with more questions than answers, and when the only positive things were being hooked up to a heart monitor and IV and knowing that at least if something went drastically wrong I was already at the hospital.) Especially in the midst of the current COVID pandemic when going to the ER feels scarier than staying home, it’s such a relief to be free from worrying about when the next episode will occur. 

 

During major episodes, especially pre-diagnosis, ECGs showed a temporary heart arrhythmia called Long QT. I made several trips to a cardiologist, did a stress test, and wore a holter monitor for a long weekend. Now I am empowered knowing that despite the stress to my heart during the major episodes of adrenaline, my heart is healthy and wasn’t damaged by the tumour. In fact, now, without the tumour, I can actually get my heart rate up during exercise without feeling like I’m endangering myself. 

 

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No more holter monitors! I wore this one for 72 hours on a weekend when my family went to the beach. No swimming for me! And my poor skin is of course allergic to the stickers…

I want to end by noting how incredibly fortunate I am and how blessed I feel for the timing of my surgery. COVID19 was declared a pandemic by the WHO on March 11. On March 12, the Ontario government announced that schools would be closed for two weeks after March break. My surgery was on the 13th. Two days later, the Ontario government announced that it would be asking hospitals to cancel elective surgeries to clear hospital beds for the impending COVID crisis. Elective surgeries aren’t surgeries that people are choosing to have, by the way. They are non-emergency surgeries – surgeries that are scheduled ahead of time. My post-op appointment ended up happening through a phone call with my surgeon, and when I told him how fortunate I felt just to have actually had my surgery, he told me that even his cancer surgeries have been postponed indefinitely. Knowing how I felt in the time leading up to surgery, I can only imagine what it would be like to have had a surgery delayed and not to know when it will finally happen. I can only imagine what my mental health would be if I were once again waiting and fearing for my health in the meantime. I empathize so deeply with anyone in this situation. 

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Please enjoy this picture of me with my sister just hours after surgery. Barely conscious, extremely groggy and nauseous. Last time feeling this bad because of the pheochromocytoma!!!

Life with Pheochromocytoma

I have a pheochromocytoma, and it really, really sucks. I’m writing today from deep in an episode. My hands are shaking so much that it is taking some time to type the correct keys, and my brain feels extremely wired but it’s making it hard for me to keep one single train of thought going for too long. 

Today is probably my last acute episode. They tend to happen every two months or so, and I’m 27 days out from surgery. [Insert dancing and shouts of “Hallelujah!” here.] I just absolutely cannot wait to have surgery, and I know I’m going to be okay. But today isn’t okay. 

It’s actually loads and loads better than what it used to be when I’m in the acute phase. Medication is doing its job. But with some 20 times the normal level of adrenaline coursing through my body, medication can’t prevent all the symptoms. 

It took me a long time to get a diagnosis, and I haven’t been able to find a whole lot of people’s stories online. But the ones that I’ve found and read have given me a sense of solidarity, a sense of understanding I’d been looking for. So I thought maybe I’d write a bit of my own story here, and maybe someone will find it and it will give them hope. 

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Some quick basics about Pheochromocytoma for you

My story actually stretches back to about four years ago. Somewhere around there, I started having these weird moments where I would wake up feeling shaky and with a weird feeling like a pit in my stomach. I thought it was low blood sugar. I would eat, and the feeling would eventually go away. I told my doctor, and she had me do a fasting glucose test. It came back as normal, and she told me I was fine. That was the end of it. 

I kept having the feeling, though. Eventually it wouldn’t really go away after I ate. Then in June 2018, I woke up with it, went to school and taught all the way through it, came home, and threw up. And threw up. And threw up. And then in September, the same thing – only with chest pain and a sense that my heart was pounding. When you work at a school, there’s pretty much always some kid who’s going home because they’re throwing up. It’s pretty easy to blame it on a stomach bug. 

But then the same thing happened in November, and I realized this was a pretty solid pattern. I took myself to a hospital ER, where two nurses and a doctor suggested that I was having a panic attack. The doctor actually came back and apologized when he saw my lab work – my results all showed something very wrong and he told me apologetically that they wouldn’t be able to discharge me. I cried both out of relief and frustration – it was the day of parent-teacher conferences and I didn’t see how I should have to miss those… I knew that if the pattern continued, I would actually feel okay again in a couple of hours. Okay, more like most of the day. 

I ended up being transferred to another doctor who was very empathetic and who I felt really listened and asked thoughtful questions. With the vomiting, pain, and high levels of inflammation from my bloodwork, she suggested gallstones, and I was eventually given an ultrasound which confirmed that I do have a gallstone. 

I left the hospital with a sense of relief, booked an appointment with my family doctor, and discussed a referral to a surgeon. I couldn’t believe how quickly that referral happened, and I went to the surgeon with nervous excitement. He looked at my labs, asked me some questions, and very quickly told me that my problem was not gallbladder related. Back to square one. 

The next six months were a cycle of feeling totally fine until an episode, then waking up with a sense of dread when the next one started, and either deciding to go to the hospital where I would eventually be sent home with a sort of metaphorical shrug of the shoulders or deciding to just stay home and tough it out. By June, I was gathering a medical file of all of my tests, ER visits, and my own data. I was being referred to numerous specialists who would basically say, “Whatever it is, it doesn’t seem like it’s in my field…”

The summer was a lovely break, and I felt good. I completed a summer course, went to Guatemala, took my parents on a road trip, went church camping, and everything was good. I returned to school, sat through teachers meetings, set up my classroom, met parents and students at our open house, and I felt good. Then the morning after the open house, I woke up and symptoms had started again. I woke up actually thinking I had a migraine. I took an Advil and went back to bed, texting my parents that I wouldn’t be coming to see them that day. I woke up an hour later and realized what it really was. My hands were shaky. I felt like I had a pit in my stomach. I couldn’t shake the sense of dread. As the day wore on, I felt extremely wired, like I couldn’t sit still. Eventually, I felt the band of pressure tighten across my chest. It felt like my heart was beating hard, working for every beat. Soon the vomiting started, and it wouldn’t stop. I decided I wasn’t going to the ER – it didn’t feel like the ER did anything for me anyway. It was just hours of torture and waiting and vomiting, and doing it in front of other people instead of in the comfort of my own home where at least I could alternate between couch and bed and bathtub and had Netflix to sort of distract me out of my misery. 

But it was bad. It was really bad. It amazes me that this condition can take you from feeling perfectly healthy and good to I might die at any moment in a few hours. So eventually I went to the hospital, taking my folder of medical files along with me. The ER doctor was so kind, and when he started asking questions and I pulled out my files to show him answers, he wasn’t annoyed. He sat on the edge of my bed and paged through my files, occasionally asking questions. I would point him to answers in my file. He said to me, “We need to get someone smarter involved here. Whatever this is, I am out of ideas.”

Enter my new doctor, internal medicine. He came to see me in the early morning hours. He also paged through my files, asked me multiple questions, went and did some thinking and research. He came back again to talk to me around 9 in the morning. He had some ideas he wanted to follow up on, and he told me I could stay for some testing, but with it being Saturday on a holiday weekend, he said I would probably not be able to get the tests done that day. I knew my symptom pattern well and my chest pain was lessening and heart palpitations were decreasing, so I knew I would actually be able to go home and sleep. We agreed that I would come into the hospital for an appointment to see him. But before I left, he gave me a note with the word pheochromocytoma on it. 

Let me summarize the next two months: multiple hospital visits. Approximately one a week. Testing, follow up testing, different testing. By the end of September, I had the results back which indicated pheochromocytoma was very likely, also meaning I could take the right medication. By the end of October, I’d had an MRI. By the beginning of November, I had my final follow-up with the internist and was under the care of an endocrinologist, referred to surgery. Now that we knew what to test for, we could run testing while I had symptoms and very easily discover the results – the crazy amount of extra adrenaline coursing through my system. In December, I had a consult with the surgeon. At the end of January, I received a surgery date. Now here we are, 27 days away from surgery. 

Pheochromocytomas are extremely hard to diagnose. They often come with high blood pressure, sweating, and headaches, which could be attributed to any number of conditions. Panic attacks are an actual symptom of the condition. This makes me feel approximately 1% more gracious to the nurses and doctor who suggested that I was having a panic attack. But it makes me even more grateful and amazed by the doctor who suggested it to me before I had even left the ER on my last ER visit. 

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This take on a pheochromocytoma amused me. Pretty accurate for the “typical” pheo… not exactly my symptoms though.

You may be familiar with the saying, “When you hear hoofbeats, think of horses not zebras.” This aphorism was created by Theodore Woodward, a professor at the University of Maryland School of Medicine to remind medical students to choose the common explanation over the exotic one when it comes to diagnosis. In fact, neuroendocrine diseases use a zebra-patterned ribbon to represent this exact idea – that sometimes the explanation of the hoofbeats actually is the zebra. 

The incidence rate of pheochromocytomas is somewhere around 2 per 1 million people. However, many researchers think that number may be quite low since many pheochromocytomas aren’t found until autopsy. The average time from onset of symptoms to diagnosis is three years. This all just makes me even more grateful and amazed to have received a diagnosis. 

So I’m getting through this awful day by counting my blessings. 

I’m so very grateful for the diagnosis that reassures me – no more wondering if I’m going to die. 

I’m so very grateful for the medication that diagnosis provides – symptoms are present but manageable, especially compared to previous episodes. 

I’m so very grateful for universal health care. I’m not hundreds of thousands of dollars in debt. When I pondered not going to the hospital, it was never because I couldn’t afford it. 

I’m so very grateful for a doctor who not only diagnosed me, but provided the most excellent patient care while we searched for a diagnosis. 

I’m so very grateful for friends who prayed for me, who took care of me, who texted to see how I was, who gave rides to or from the hospital. 

I’m so very grateful to God for being with me through all of this, using it to teach me more about who God is and who I am.